An inspirational advocate for organ donation, Coen Ashton has died.

Coen, 20, was born with cystic fibrosis and diagnosed with insulin-dependent diabetes at eight.

His family moved to Newport from Queensland to be close to The Alfred hospital as Coen awaited a kidney transplant.

At 13, he became the youngest person to jet-ski the 2000-kilometre length of the Murray River to raise awareness of organ donation.

His efforts, while awaiting a double lung transplant, resulted in about 1000 people signing up to the Australian organ donor register.

Coen underwent a double lung transplant when he was 15.

He had been awaiting a life-saving kidney transplant from either mum Dawn or dad Mark, when he died in hospital on Wednesday.

In a family statement, Coen’s parents and brother Kai said he had lived life the way that everyone should, never wasting a day.

“He loved sharing his zest for life and changed many people’s lives along the way.

“He enjoyed having everyone along to follow his life adventure.

“We will dearly miss him and the adventures he sent us on. There are no regrets, Coen never wasted a day.”

Coen received the 2011 national Pride of Australia Child of Courage and People’s Choice Award, using his profile to promote organ donation.

The staff of the Organ and Tissue Authority and DonateLife said they honoured Coen’s life and his contribution to promoting awareness and family discussion about organ donation.

A spokeswoman for the Organ and Tissue Authority, which supported Coen’s speaking tours, said he had inspired thousands of school students across Australia to think about organ and tissue donation.

“Coen is remembered for his generosity, for his life mantra of ‘my donor, my hero’,” she said.

“Every day, he endeavoured to honour his donor and their family by encouraging Australians to think about organ donation.”

In his last interview with Star Weekly in August, Coen had revealed his typical humour while awaiting a kidney transplant.

“I have got my eye on one of mum or dad’s kidneys,” he had said.

“Everyone wants to be hero. Become an organ donor and you can save up to nine lives. My donor, my hero.”

A gathering to farewell Coen will be held at Williamstown Town Hall on Saturday, October 28 at 2pm. Those wanting to join a motorcade procession should meet at 12.45pm. For details visit Coen Ashton’s Facebook page.

For information on organ donation, visit donatelife.gov.au